September 23 is WED/RLS Awareness Day. Let's raise awareness during the month of September. You can help raise awareness of Willis-Ekb...

Thursday, August 07, 2014

September 23 is WED/RLS Awareness Day. Let's raise awareness during the month of September. You can help raise awareness of Willis-Ekbom
disease/restless legs syndrome (WED/RLS) by picking to do 3-4 items from the list below. Feel
free to challenge yourself and others to check off more items on the list.

Send WED/RLS information, including old editions of NightWalkers, to your doctor’s office so other patients may benefit.

Be a guest blogger at www.wedinfo@blogspot.com by writing a personal story or creating an art image to share with the WED/RLS community. Submit your story to info@willis-ekbom.org and title the email Guest Blogger Request.

Request a free WED/RLS awareness bracelet and wear it the month of September. Email us at info@willis-ekbom.org and title the email Awareness Bracelet Request.

Offer old issues of your Nightwalkers to your local library for their magazine rack.

Email or mail us contact information of five (5) friends or family members to give them a free trial membership with the Foundation. Email us at info@willis-ekbom.org and title the email Trial Membership Requests.

Purchase and wear an apparel item from the WED Foundation to the local mall, park, hospital or community event.

Have your city put WED/RLS Awareness Day on the community calendar.

Design and create your own WED/RLS awareness t-shirt or tote bag to wear or carry around the month of September.

Ask your neighbors to leave their porch lights on overnight on September 23 to support the nightwalkers in your community.

Disclaimer : Guest blog posts are the opinions of the authors only and not of the WED Foundation, its employees or its Board of Directors....

Wednesday, August 06, 2014

Disclaimer: Guest blog posts are the opinions of
the authors only and not of the WED Foundation, its employees or its Board of Directors.
Publication on the WED Foundation’s blogdoes not imply endorsement by the WED
Foundation. Therapies and results described in Bedtime Stories reflect the
experiences of individuals and cannot be generalized to everyone with WED/RLS.
It is important to talk to your healthcare provider and investigate concerns
such as safety, efficacy and cost before making any changes to your treatment
regimen. Stories may be altered for length or clarity.

Three years ago my WED/RLS that had been an occasional annoyance suddenly made my life very difficult. Plane rides were torture. I was only sleeping a couple of hours a night. Sitting on a couch to read or watch a movie at night became a distant memory.

I went to a neurologist who did all kinds of testing. My neurologist said the WED/RLS looked primary and prescribed a dopamine agonist drug. I began reading so much online about sufferers who had augmented on the dopamine agonist drugs. Other sufferers wrote about very troublesome side-effects. I had a bad reaction a few years earlier when I took statins, and was very reluctant to take another powerful drug.

So I researched online and found a drug called kratom. It’s the leaf of a tropical plant in southeast Asia. Wikipedia describes it like this: “Kratom behaves as a μ-opioid receptor agonist like morphine and is used in the management of chronic pain, as well as recreationally.”

So I researched.

I found that not only was it not FDA approved, the FDA had labeled it a drug of concern. But it was legal, and everything I found online indicated it was safe. Apparently, it does not depress breathing, like a regular opioid does. It is also hard to overdose on it, as you have to take so much that you become nauseous first and throw-up. There were a couple of cases of teenagers who had mixed it with other drugs, and one died. But, no matter how hard I looked, I couldn’t find any cases of anyone who had died just from kratom. This, of course, distinguishes it from prescription opiods.

So I decided to try it. I didn’t look at it as a good option, but it seemed a less-bad option than the dopamine agonist drugs, which I really did not want to take. At this point, WED/RLS had severely impacted my quality of life. I found kratom widely available on the internet, even on Amazon.com, and began ordering the powdered leaf.

It’s been over a year now. I take kratom daily and it has given me my life back. The strand I use—and that which at least one other WED/RLS sufferer I know uses—is the red leaf Borneo strain. I make up a dose by letting a gram of kratom sit in a cup of orange juice for twenty minutes, so it dissolves. Then I drink it. Usually, over 24 hours, I’ll take four or five doses. I also have a capsule-filling device I got on Amazon, and will make up capsules to keep in my purse or take with my when I travel.

In addition to the kratom, I take a good variety of vitamins and minerals. The only other thing I take that might be helping as well is L-theanine.

Last month I flew comfortably from Newark to Honolulu—a thirteen hour flight. I had one little period of mild discomfort when I woke up from a nap, but fixed that by simply walking to the restroom. I took a bit more kratom than usual for this trip—maybe as much as ten grams, from the time I left the house until we landed. I usually get six, and sometimes seven, hours of sleep every night. I usually wake up twice—since kratom hasn’t produced time-released leaves yet—and take another dose, and then perhaps walk around for five or ten minutes and then go back to sleep.

For a while, I took the maeng da strain. It made me constipated. After I switched to the red leaf Borneo, and started taking some extra magnesium, the constipation cleared up. The only side effect I notice now is that I get a headache if I don’t drink enough water. I’ve discovered you need to drink a good deal of water while taking kratom.

Kratom doesn’t make me sleepy or nauseous. It manages both the hyper-alert feeling as well as the creepy/crawly feeling of WED/RLS. I don’t feel high at all; in fact, I just feel normal, probably because I don’t take enough to feel high. With the low dose I take, I can drive and do everything that I normally do.

So far, I haven’t seemed to develop any tolerance for the drug and am taking about the same dose I started with over a year ago. But, as we all know, the disease is a moving target, and I expect as it worsens I’ll have to start taking a bit more. So far, all is really good.

I hope my story can help others.

About the guest blogger: Mary L. is an active member on the Foundation's discussion board (www.bb.rls.org).

About Me

Mission: The RLS Foundation is a 501(c)(3) nonprofit organization
dedicated to improving the lives of the men, women and children living with
this often devastating disease. Our
goals are to increase awareness, improve treatments, and to find a cure for RLS.